*Paige showing Maddie how to stand on a stool
OK...So I have been in an ambulance twice in my life (that I know of) and both times have been with in the last 2 months! Our wonderful, sweet, lovable Madeline has figured out yet one more way to get what she wants.
The other day she was quite crabby and we were trying to make dinner, get drinks etc. Well she wanted to be held and walked around and I just did not have the time at that moment. I sat her down on the other side of the gate and said , "Well you are going to have to throw your fit, sorry Maddie." She cried and screamed and stood up crying. All of a sudden I did not hear her breath in and turned to see her turning purple. I knew she was going to fall but also knew I could not get to her in time. I was very calm as I watched her tip sideways stiff as a board. I heard her smack and then it happened. That is when I freaked...Maddie arched her back stiffly and turned completely blue with a few convulsions. She lunged forward and was convulsing and gargling. This lasted only about a minute and then she began screaming. We knew it was a seizure and had to get her checked. She was VERY tired after it happened and about an hour later after a ton of Tylenol at the hospital, she was completely fine.
Maddie had what is called a Breath Holding Spell/seizure. Ya- there is a name for this crazy behavior. It is not like real seizures as does not cause ANY brain damage. Her pediatrician said it will most likely happen again (and could happen frequently) and there is nothing you can do about it. He said, "have fun!".... He knows Maddie is quite the stink.
The doctors at the hospital could hardly touch her as she screamed if anyone even looked at her. She hates adults that she doesn't know and certainly does not want them touching her! The nurse came in to discharge us and stood on the other side of the room giving the discharge instructions while Maddie watched Dora as a distraction. My poor Mother-in Law (Debbie) came to bring her toys and Maddie would not even touch them until she was on the other side of the room. As soon as Debbie touched her water bowl, Maddie screamed and wanted nothing to do with it anymore. This has been the longest lasting phase that is really difficult to handle with Maddie. It gets really hard when we are in public places and someone says, "Oh, look how cute you are." and Maddie suddenly arches and screams. Or when she is crying and strangers think they are being helpful by saying, "What's the matter sweetie?" and Maddie freaks even more. It is so embarrassing to tell people that she is only crying because they are talking to her. Oh do I hope that passes soon.
Anyway she is fine- just clearly much smarter than we ever thought and can now get her way by holding her breath and having a seizure...
We had another scare just a few days before this as Maddie woke up and could not open her eyes for a few hours. She tried very hard but her lids just did not open. We put her down for a nap and when she woke up she could open them a little and then with in the hour was fine opening them with no problem at all. Something similar has happened once before at the beginning of her photophobia. I always tell her doctor but no one really knows why this is happening so there is nothing that can be done. Her eyes have been pretty good since then though...even after her head bonk and such. She is clearly back to good days and is loving it...for now.
We got a call yesterday that they want us to go back to the TSC clinic in Boston February 19th. This is earlier than we were supposed to go (at the end of March early April). I am hoping they will have our test results by then.
Ahhh...Until then I am going to pad my entire house with foam, lock all the doors, keep the dog away, and make 2 bubbles for my kids to live in...just for a few years...before the next drama in our life occurs :)
The other day she was quite crabby and we were trying to make dinner, get drinks etc. Well she wanted to be held and walked around and I just did not have the time at that moment. I sat her down on the other side of the gate and said , "Well you are going to have to throw your fit, sorry Maddie." She cried and screamed and stood up crying. All of a sudden I did not hear her breath in and turned to see her turning purple. I knew she was going to fall but also knew I could not get to her in time. I was very calm as I watched her tip sideways stiff as a board. I heard her smack and then it happened. That is when I freaked...Maddie arched her back stiffly and turned completely blue with a few convulsions. She lunged forward and was convulsing and gargling. This lasted only about a minute and then she began screaming. We knew it was a seizure and had to get her checked. She was VERY tired after it happened and about an hour later after a ton of Tylenol at the hospital, she was completely fine.
Maddie had what is called a Breath Holding Spell/seizure. Ya- there is a name for this crazy behavior. It is not like real seizures as does not cause ANY brain damage. Her pediatrician said it will most likely happen again (and could happen frequently) and there is nothing you can do about it. He said, "have fun!".... He knows Maddie is quite the stink.
The doctors at the hospital could hardly touch her as she screamed if anyone even looked at her. She hates adults that she doesn't know and certainly does not want them touching her! The nurse came in to discharge us and stood on the other side of the room giving the discharge instructions while Maddie watched Dora as a distraction. My poor Mother-in Law (Debbie) came to bring her toys and Maddie would not even touch them until she was on the other side of the room. As soon as Debbie touched her water bowl, Maddie screamed and wanted nothing to do with it anymore. This has been the longest lasting phase that is really difficult to handle with Maddie. It gets really hard when we are in public places and someone says, "Oh, look how cute you are." and Maddie suddenly arches and screams. Or when she is crying and strangers think they are being helpful by saying, "What's the matter sweetie?" and Maddie freaks even more. It is so embarrassing to tell people that she is only crying because they are talking to her. Oh do I hope that passes soon.
Anyway she is fine- just clearly much smarter than we ever thought and can now get her way by holding her breath and having a seizure...
We had another scare just a few days before this as Maddie woke up and could not open her eyes for a few hours. She tried very hard but her lids just did not open. We put her down for a nap and when she woke up she could open them a little and then with in the hour was fine opening them with no problem at all. Something similar has happened once before at the beginning of her photophobia. I always tell her doctor but no one really knows why this is happening so there is nothing that can be done. Her eyes have been pretty good since then though...even after her head bonk and such. She is clearly back to good days and is loving it...for now.
We got a call yesterday that they want us to go back to the TSC clinic in Boston February 19th. This is earlier than we were supposed to go (at the end of March early April). I am hoping they will have our test results by then.
Ahhh...Until then I am going to pad my entire house with foam, lock all the doors, keep the dog away, and make 2 bubbles for my kids to live in...just for a few years...before the next drama in our life occurs :)
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